Learning How to Dole Out Bad News

[Guest guest]

January 10, 2006

Doctors Learn How to Say What No One Wants to Hear

By ABIGAIL ZUGER

ASPEN, Colo. - In one room, a woman sobs into her hands

after learning

that her breast cancer has spread to her liver. Next door,

a young man

cured of lymphoma two years ago listens impassively to the

news that

his disease is back. Down the hall, a grizzled middle-aged

hardware

store owner hears that despite radiation treatment his

prostate cancer

is now in his bones.

" You sure of that? " he says incredulously to the young

doctor breaking

the news. " You sure those were my films? "

It could be any hospital's outpatient clinic. Instead, it

is a small

experiment in teaching cancer doctors to do the hardest

part of their

job: not doling out radiation and chemotherapy but caring

for the

patients who fail these treatments. The patients in this

case are

actors but the doctors are all real: young oncologists who

converged

at this off-season ski resort for a five-day course in how

to talk to

patients about the worst possible news.

All doctors have these talks from time to time, but cancer

doctors

face more than their share. According to one estimate, over

the course

of a career an oncologist will break bad news to patients

about 20,000

times, from the first shocking facts of the diagnosis to

the news that

death is near.

Despite all the practice, it is the rare doctor who is any

good at

these discussions. And while some medical schools now offer

basic

communication courses, more sophisticated training for

specialists is

uncommon. One recent survey found that less than a third of

oncology

training programs attempted any form of communication

training; only

about 5 percent of practicing oncologists have had any.

" The general feeling has been that these are not teachable

skills -

that either you have it or you don't, " said Dr.

Back, an

oncologist at the Fred Hutchinson Cancer Research Center in

Seattle.

Not only do most doctors not have it, Dr. Back said, but

those who do

generally hone their skills by trial and error, saying all

the wrong

things until they find the right ones, leaving a trail of

tangled

miscommunications and alienated patients.

Five years ago, Dr. Back and four colleagues obtained a

$1.4 million

grant from the National Cancer Institute to devise a better

way.

What they have created is a short immersion course in the

language of

bad news, one which, like all good language courses, leaves

the

lecture hall far behind. Instead, students spend their time

with

native speakers - in this case, four preceptors, or

teachers, who are

experts in medical communication and five actors who stay

in the roles

of patients with terminal illness for the duration of the

course, each

growing sicker as the days go on.

With actors instead of real patients, the doctors can make

mistakes,

redo and reword their thoughts and get feedback on how best

to deliver

such lines as, " I'm afraid there's no more chemotherapy out

there for

you, " or " probably weeks to months, not years. "

When it comes to saying these words, " I don't think

patients realize

how worried we are, " said Dr. Carrizosa, one of the

students,

who is completing his oncology training at the University

of North

Carolina.

Research shows that he is right. For patients, the flood of

emotion

that comes with bad news drowns out everything else,

especially the

reasoned intellectual responses that usually guide human

interactions.

Scans have actually shown that patients react to upsetting

news first

with the primitive limbic lobe of the brain that guides the

deepest

instincts and emotions.

" If a patient is back in her limbic lobe, she's not going

to hear a

thing you say, " said Dr. Walter Baile, chief of psychiatry

at M. D.

Cancer Center in Houston and one of the course

preceptors.

As a result, the stilted, jargon-ridden, information-packed

sentences

in which most doctors encase bad news are pointless.

Patients remember

nothing about them except the fact that the doctor clearly

has not a

clue what they are experiencing.

But for doctors, learning what to say instead can be

grueling.

The 20 doctors who took the course this fall, the eighth

group over

the last four years, are all receiving advanced oncology

training at

some of the country's most prestigious hospitals, and they

are by any

standard among the brightest and most articulate around.

They have

been taking care of patients for years, and have had

hundreds of

bad-news conversations.

The fact that they signed up for this course at all shows

they are

more attuned to communication problems than most.

But even they, when they first come face to face with an

actor playing

a cancer patient, routinely lapse into the awkward,

defensive

" medspeak " patients know so well. They mumble about

" abnormal

laboratory findings, " " concerning small shadows, " " evidence

of some

lesions in the bones. "

They blurt out long paragraphs of information without

stopping for

breath. They smile nervously at all the wrong times.

" This is so uncomfortable, " said Dr. Biren Saraiya, an

oncology fellow

at the University of Medicine and Dentistry of New Jersey,

searching

in vain for the right words to tell a jaunty young man that

a routine

blood test is abnormal and that the cancer the patient

thought he had

licked might be back.

" He's young, not much older than me, " Dr. Saraiya said. " I

am afraid

for him. But how afraid should I make him? "

His preceptor, Dr. Arnold, an internist and

communications

expert at the University of Pittsburgh, suggested: " Name

your

emotions. And then acknowledge he doesn't have to have the

same ones. "

Sometimes a phrase like " you pay me to do the worrying "

will strike

the right note of empathy and concern, Dr. Arnold said.

Sometimes,

though, it will infuriate a patient who hates to be

patronized. So

find out who the patient is, he said. Be direct. " Say 'Help

me

understand your story,' or 'Are you the kind of person who

likes to

know all the details?' Dr. Arnold said. " Figure out what

kind of

doctor your patient wants you to be. "

Over the week, the students learn helpful phrases for all

the landmark

conversations of bad cancer, from the first intimation that

a cure is

not possible to the discussions of how and where patients

want to live

their last weeks.

Saying, " I wish things were different " can let patients and

families

know that things are going badly, but emphasize that the

doctor is on

their side, said Dr. Tulsky, a palliative care expert

at Duke.

" Hope for the best; prepare for the worst " can be a useful

mantra, too.

The doctors learn never to give bad news while standing up,

never to

do it in a public corridor, always to have a box of Kleenex

at hand.

They learn not to try to cheer up patients who have every

right to be

grief-stricken. They learn to address the reasons behind

the question,

" How long do I have? " rather than just reciting numbers

that are

invariably inaccurate.

They also learn every detail of the fictional lives of the

five actors

they interview daily: the young man with relapsed lymphoma,

the young

mother with metastatic melanoma, the woman whose bones and

liver are

riddled with breast cancer.

By the last day of the course, as the actors, visibly

enfeebled, lie

in bed and the doctors each tell them goodbye, there isn't

a dry eye

in the house.

" This brings back a lot of memories, " said Dr. Liu,

an

oncology fellow at the University of California, San

Francisco,

reaching for the Kleenex himself.

He had just told the patient with terminal breast cancer,

played by

Jeannie Walla, that he had treasured their time together

and that he

would miss her.

Ms. Walla told him not to worry about his tears. " For a

patient, " she

said, " it is the most comforting thing you can do. "

All good feelings aside, though, this $1.4 million question

remains:

Does this kind of training work?

The actors, all members of the local Aspen acting

community, have now

watched eight batches of doctors progress through the

course and are

enthusiastic. " Sometimes the doctors who show up are so bad

you say,

'Oh God, this is hopeless,' " Ms. Walla said. " Then you

watch them

actually improve. "

Dillon, another actor, said, " No matter what level the

doc is at,

we see them go up a notch. "

For a more formal validation, Dr. Back and his colleagues

have

accumulated a load of pre- and post-training questionnaires

and

videotaped interviews, which are still being analyzed.

But the long-term results are anyone's guess. Three months

after a

similar British course, doctors were still communicating

more

effectively with their patients.

No one knows whether this kind of training will make any

difference

after years.

" Right now, it's an effort to do all this, " said Dr.

Saraiya of New

Jersey. " It's hard to add the extra effort. But I'm afraid

of losing it. "

The key is practice, said Dr. Arnold, who likened learning

to talk to

patients to learning to ride a bicycle. At the beginning it

is

impossible, at the end there is nothing to it; in between

there is a

long wobbly path where the student needs steadying hands at

the ready.

" And this is the only way we know how to teach, " Dr. Arnold

said, " to

have five kind people watching you and holding you up. "